Jeff is one very special young man! He has a rare syndrome called CHARGE Syndrome. He has faced many life threatening conditions and surgeries in his life. He is such a fighter and has blessed many lives with his strong, beautiful spirit. He is deaf/blind and non-verbal and deals daily with many challenges.
He is 29 yrs. old and is a very happy young man with a fun sense of humor.

Tuesday, December 27, 2011

WOW, what a GREAT Christmas I had!! I have been so excited about Christmas that I was the one to wake everyone up this year! Dad is usually the one to wake me up,but I beat him to the punch this year... I got them up at 5:30 AM! I was just so excited!

We opened our gifts and Santa and everyone else gave me just what I like...things that spin, light up, and vibrate. Everything was so awesome! After we ate breakfast we got ready for church. We only had one meeting today and I was very well behaved at church. Mom said she was so proud of me.

When we got home from church, my Grandma and my Aunt Patti came over to share the day with us. We enjoyed a yummy dinner and lots of visiting. However, I really didn't visit that much. I just wanted to go to my room and break open all my toys ﻿to see what was inside them. I just haven't caught on yet that if I break a toy, it won't work anymore. But that's okay, because then I love all the pieces! I love to encase them in tape and tie string on them and hang them everywhere. I am a really creative guy you know! Mom did put a couple of things I got away because they are things that she has to help me with. Later in the early evening, I almost forgot about our Christmas stockings, and had to remind Dad that we hadn't opened them yet. Grandma & Aunt Patti had gone home, so Mom, Dad and I opened our stockings and wow, I got even more neat stuff. Yes indeed, I had an awesome Christmas!

Santa knows how much I LOVE balloons, so he always puts balloons under the tree for me. Here's a picture of me putting all 20 balloons on the table.

Here I am having a GREAT time popping all 20 balloons one by one. Every time one popped, I would just crack up laughing.

Here is my sweet little Grandma Baker. I love her. Isn't she just a cutie!

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Here is my Aunt Patti. She spent the day with us too.

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Here I am eating our yummy Christmas Dinner!

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Here is my bucket filled with so many of the things I love. Of course, most everything was broken, but I still LOVE every piece! Ahh, it's been a perfect day and I'm one happy guy.

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I sure hope everyone else had a GREAT Christmas too. Mom and Dad said that they love to see the excitement and joy on my face, and that I really make their Christmas. Mom said how blessed she is that she will always have a little boy to bring such joy, wonder & smiles to her on Christmas morning. Whatever, I know that I am loved and I'm a happy guy! Merry Christmas everyone!﻿

Tuesday, December 13, 2011

I am getting so excited! Christmas is coming! Here is what it looks like at our house. When I see all these decorations go up, I know that a fun, special time is on it's way.

When things start looking like this, I KNOW it's Christmas time.

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I love my countdown calendar. Mom doesn't have to remind me to move Santa to the next day. I do it all on my own as soon as I get up in the morning.

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I get so excited when Mom hangs up our stockings. I love all the goodies that Santa puts there when he comes to my house.

My spinning, rocking chair sits right next to this. Oh how I LOVE to sit here and look at the Christmas lights on the tree.

I love my singing Santa, plus Mom's reminder that "He who has not Christmas in his heart will not find it under the tree."

This is one of our Nativity scenes. Mom says this is what Christmas is all about...Jesus being born. She said without Christ, there would be no Christmas. You know, I can't see well at all, I can't hear at all, my mind doesn't comprehend a lot of things, I can't speak at all, but my Spirit and heart work well. I can feel and understand things that work through the Spirit, and I have proved that to Mom many times.

I'm a happy, excited guy, and am really looking forward to Christmas. I love Jesus and Santa. Mom said she and I are going to make some Pumpkin Bread today to give to people...yea! Hope we can make a gluten-free one for me!Posted by My Mom

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About Me

Jeff is one very special young man. He was born with CHARGE Syndrome. CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

To find out more about CHARGE Syndrome

Note From My Mom

As Jeff's Mom, I feel so very blessed to have this choice young man to love, care for and serve daily. He is a delight and has been my greatest JOY and CHALLENGE rolled into one terrific young man. Jeff has touched more people and overcome more in his short life than most people do in a lifetime. What an example and inspiration he is. He is my mentor, my hero, my teacher. I truly believe Jeff is one of those special spirits that was sent here just to teach others. I know he certainly has taught me what's most important in this life. He has taught me so much and continues to do so daily. Because of Jeff, and wanting to help him grow to be the best he can be, I feel I have probably gained the equivalent of an honorary degree in medicine, education and law. At times it's been extremly hard, and at times it's been much easier. But I can truthfully say, it's been worth every tear I've shed, every ache in my heart, every fight I've had to fight. The smiles, the laughter, the love, and the strength of my son have made it all worthwhile. I am so grateful and thankful to my Heavenly Father for the blessing of this choice young man!